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Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: a qualitative study.

ABSTRACT: Background:An increasing number of research projects are now collaborating with persons who have lived experience of a specific health-related situation, such as a prenatal diagnosis of congenital heart defect. Such collaboration has the potential to provide valuable insights how to plan future studies, but little is known how these persons experience such involvement. The aim was to explore how persons with lived experience of a prenatal diagnosis perceived collaborating in a research project utilizing patient and public involvement to identify relevant research questions and develop suitable interventions. Methods:Persons with experience of a prenatal diagnosis of congenital heart defect in the fetus were interviewed after their participation in a yearlong collaborative research project (n?=?9) aiming to explore relevant research questions and develop interventions for expectant parents with a recent prenatal diagnosis. Interviews were analyzed with qualitative content analysis. Results:Respondents acknowledged altruistic and personal value related to the collaboration. They valued the opportunity to contribute to future research so that the care of persons experiencing a prenatal diagnosis may be improved. Mixed feelings were described related to sharing and reliving experiences. While it had been emotionally difficult to relive a traumatic event, it also served as an opportunity to process experiences and psychologically adapt. Respondents with terminated pregnancies appreciated the possibility to meet peers, since it was difficult to find peers in everyday life and talk about their experiences with others. Conclusions:Researchers who plan to collaborate with persons who have experience of a prenatal diagnosis should be mindful of the potential associated emotional experiences. The appreciation related to meeting peers calls attention to the need for studies that explore peer support.

SUBMITTER: Carlsson T

PROVIDER: S-EPMC7110790 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: a qualitative study.

Carlsson Tommy T Marttala Ulla Melander UM Mattsson Elisabet E

Research involvement and engagement 20200331

<h4>Background</h4>An increasing number of research projects are now collaborating with persons who have lived experience of a specific health-related situation, such as a prenatal diagnosis of congenital heart defect. Such collaboration has the potential to provide valuable insights how to plan future studies, but little is known how these persons experience such involvement. The aim was to explore how persons with lived experience of a prenatal diagnosis perceived collaborating in a research p ...[more]

PMID: 32266084

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Project description:ImportancePrenatal cardiac screening of the first and second trimesters has had a major impact on postnatal prevalence of congenital heart defects (CHDs), rates of termination of pregnancy (TOP), and outcomes among children born alive with CHDs.ObjectiveTo examine the prenatal and postnatal incidence of major CHDs (ie, necessitating intervention within the first year of life), detection rate trends, rates of TOP, and the association of cardiac screening with postnatal outcomes.Design, settings, and participantsIn this cross-sectional study, 3827 fetuses with antenatally diagnosed major CHDs in the Czech Republic (population 10.7 million) between 1991 and 2021 were prospectively evaluated with known outcomes and associated comorbidities. Prenatal and postnatal prevalence of CHD in an unselected population was assessed by comparison with a retrospective analysis of all children born alive with major CHDs in the same period (5454 children), using national data registry. Data analysis was conducted from January 1991 to December 2021.Main outcomes and measuresPrenatal detection and postnatal prevalence of major CHDs and rate of TOPs in a setting with a centralized health care system over 31 years.ResultsA total of 3 300 068 children were born alive during the study period. Major CHD was diagnosed in 3827 fetuses, of whom 1646 (43.0%) were born, 2069 (54.1%) resulted in TOP, and 112 (2.9%) died prenatally. The prenatal detection rate increased from 6.2% in 1991 to 82.8% in 2021 (P < .001). Termination of pregnancy decreased from 70% in 1991 to 43% (P < .001) in 2021. Of 627 fetuses diagnosed in the first trimester (introduced in 2007), 460 were terminated (73.3%). Since 2007, of 2066 fetuses diagnosed in the second trimester, 880 (42.6%) were terminated, resulting in an odds ratio of 3.6 (95% CI, 2.8-4.6; P < .001) for TOP in the first trimester compared with the second trimester. Postnatal prevalence of major CHDs declined from 0.21% to 0.14% (P < .001). The total incidence (combining prenatal detection of terminated fetuses with postnatal prevalence) of major CHD remained at 0.23% during the study period.Conclusions and relevanceIn this cross-sectional study, the total incidence of major CHD did not change significantly during the 31-year study period. The prenatal detection of major CHD approached 83% in the current era. Postnatal prevalence of major CHD decreased significantly due to early TOPs and intrauterine deaths. The introduction of first trimester screening resulted in a higher termination rate in the first trimester but did not revert the overall decreasing trend of termination for CHDs in general.

Project description:BackgroundOnline Interaction is a critical characteristic of distance learning, and effective online communication models empower students.PurposeThis research aimed to explain students' experiences on the quality of interpersonal interactions in e-learning.MethodThis study was conducted from November 2021 to October 2022. The qualitative descriptive design via conventional content analysis was utilized. Purposeful and maximum variation methods recruited sixteen participants from three medical science universities in Iran. The data were collected through semi-structured, in-depth, face-to-face, or online interviews. Interviews were recorded through a digital recorder, and analysis was achieved simultaneously with data collection using Graneheim and Lundman (2004). The Lincoln and Guba criteria, including credibility, dependability, transferability, and confirmability, were used to improve the trustworthiness of the findings.ResultsThe results indicated the importance of different dimensions related to teaching-learning. It seems crucial to develop a comfortable and safe environment to improve interpersonal interactions. Educators should be provided with pedagogical skills to support interactions. In addition, focusing on some learners' soft skills is also vital. In addition to the significance of the teacher's inclusive role, the educational content must have critical standards. Constructive feedback and the proper use of simultaneous and non-simultaneous communication tools and social networks are other important issues in strengthening interpersonal relationships. Ultimately, comprehensive and ongoing support of learners improves the quality of interpersonal interactions.ConclusionsThe results indicated the significance of different dimensions of teaching-learning as facilitating factors of interpersonal interactions. The proper use of simultaneous and non-simultaneous communication tools and social networks are other important issues in strengthening interpersonal relationships. Ultimately, comprehensive and ongoing support of learners improves the quality of interpersonal interactions.ImplicationsThe results of this study give teachers the insight to keep essential issues in mind when developing their online courses and students to be aware of their roles in the online learning process. Also, the characteristics of simultaneous and non-synchronous platforms, social messaging networks, and learner support are crucial.

Dataset Information

Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: a qualitative study.

Publications

Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: a qualitative study.

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